Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Friday, May 31, 2013

Emotional

A couple weeks ago we took Hailey back to Utah for a follow up appointment with her Rehab doctor. This doctor is the one who had told us back in October of last year we had to start planning for the nearing end with Hailey.

Hailey was so stiff back then that she was on a pretty high dose of muscle relaxers (Baclofen) and was reaching her max fast. When we had seen this doctor in November a month later Hailey had the Botox shots in her calves and a reduced dose of muscle relaxers. She also prescribed the AFO's Hailey wears.

We saw the Dr. again in February and Hailey was doing better and didn't need Botox again, but still remained on Baclofen. Well from February until now I had thought that Hailey was doing great. We took her to Disneyland, we went on her Make a Wish, we started Physical and Occupational Therapy, I increased her days at school, and she had her 5th birthday. Not to mention that she has been sitting on the floor without assistance for longer and longer periods of time!! She does tend to timber over without notice, but that's what all the pillows are for. So when we took her to Utah I was expecting to hear that things were going great, and that we (I) was doing a great job and her tone and clonus is good...I didn't hear any of that.

I guess I tend to only hear the bad things. Her tone is still elevated, she is very tight in her hips and hamstrings, she needs to be stretched more, I guess I was doing it wrong? We had to decide either to give Hailey more Botox and the same amount of Baclofen or we have to increase the baclofen and tighten the stretch splints. Well I didn't want to do either of them, I thought things were fine the way they were with the dose Hailey is on and the splints, but what do I know? I had told Hailey she should have been born to parents who were medical professionals.

Josh and I had went through the decision of whether or not to get a DNR (Do not resuscitate) order in place for Hailey. We both decided it was something that needs to be in order because her disease is so unpredictable. The Dr. will help us to get that placed by the time we go back in August.

The Dr. was very impressed with the sitting up. She had never seen Hailey out of a bed or out of a wheelchair before. She even saw Hailey bare weight and noticed how tall Hailey is. Nearly 4ft tall and 61 pounds.

Hailey being nearly 4ft tall and me being 5ft some is becoming kind of dangerous. Every morning that it is just me home with Hailey (4 out of 7) I have to carry her down the stairs. It's easier if I just do it without thinking to much about counting the steps or attempting to look down while I step. In addition to the anxiety of the responsibility of getting Hailey down the stairs safely I worry about the constant pain I feel in my back. Hailey is going to be measured for a gait trainer that we will be able to use at home. That's a good and bad thing. It's good that Hailey will be some what independent, but we have very little space downstairs. She'll have to do circles if she ever gets the motion to propel herself. We need to get a 1 story house that will aid Hailey in using the gait trainer. I want my house to be boundless for her. Everyone knows the housing market is kind of down in the dumps so this is some added stress for us all. We are right in the middle of the Dr and Therapy appointments we have. If we find a house, what if it's farther away?

We don't have a wheelchair van. When I take Hailey anywhere I have to lift her to the car, and into the carseat. (there's that pain in my back again) I called about the grant for the modification of a van that we applied for in January and they said that it could be as soon as next year that we'd hear back from them. Um...next year isn't soon. We are kind of running short on time here. Not having a car for Hailey, so that I can take her to her appointments is another ingredient in this recipe for stress we're cooking up.

You know how people always tell you to look on the bright side, make the best of things, be positive? Easier said then done!

I've been so exhausted lately. I accidentally left out Hailey's medication that needs to be kept refrigerated. I haven't attempted to cook dinner in MONTHS (a year). Dinners are a thing of the past. I often find myself eating an apple and peanut butter and calling it dinner. I left out Hailey's therapy dough and it dried out. I'm forgetful. I will be downstairs, know I need something from upstairs, go upstairs and have no clue as to what I was suppose to get. It makes me upset and I cry. There is no nurse to help, no family to call and help, no maids to do the laundry, vacuum, or dust. It's a lot, and I know this is just me complaining about things that can not be changed no matter how hard I wish it. Through our insurance since my child is a "critical case" I get 15 minutes every 3 months to talk to a therapist. I think parents should be given automatic therapy sessions when your child has a terminal disease. Where is all the help at? I need it! When I told him about me being forgetful and tired he said: If you forget when you put your keys it's not a big deal. If you find your keys and don't know that they are keys you have something to worry about. (I guess I'm not too bad yet...)

So looking on the bright side:

Hailey has been doing great at Physical Therapy. She amazes her therapist with her will to fight or her hard headedness. When she is doing an activity and appears to be shaky they will ask and encourage her to take a rest break to which Hailey ALWAYS replies, "No!" I know I don't understand anymore about brains then what I read on the internet, but I had to ask and see if anyone knows how Hailey can go back and forth so much. 8 months ago she was a wet noodle. I couldn't hold her, she couldn't sit up, she was floppy. She's only been going to PT for maybe 6 weeks and she's starting to sit up on her own again. How is this possible? White matter doesn't regenerate itself. I know her pathways are "staticky" and that's why everything she does is so slow, because there is a "faulty connection." One of her PTs told me that there are kids that go through milestones from the beginning of life and when they have something go wrong with their brain it's easier for those children to re-learn something they already knew. Children who never "learned" something and have something go wrong in their brain have much more of an extreme difficulty to learn something they never knew before.

They have been working on re-introducing Hailey to crawling. She can not go from sitting to a crawling position yet, but once she is put into hands and knees she can hold that position. Hailey has this thing about falling without notice. We've had a few face plants, but luckily there are 2 people helping to catch her when that happens. Hailey's middle name should be determination. I'm hesitant to practice at home with her and our hard floors. I'm looking into getting a gym mat like at PT.

We've been able to take her off sleeping medication that is sedating and just using melatonin at night. We are on our way to 6 hours of sleep a night. It's not true deep sleep, but we'll take what we can get!

Hailey has been doing great in school. She was able to be out of her wheelchair and sit in a cube chair at circle time with her friends. Her speech teacher says that Hailey participates 100%.

We haven't been able to get Hailey into a Speech and Food Therapy program yet. Las Vegas is running low on pathologists. It's in the works but nothing in place as of yet. Hailey has been "talking" more and more. I've always been able to understand her, but when she converses with other people and they look at me for a translation I guess it's not as improved as I have thought it was. She says funny things all the time. I remember when she wasn't sick and she wouldn't listen to me when I talked to her and I would tell her to look at me.
Hailey was up early before Josh went to work and he put Hailey in our bed before he left. I was awake, but had my eyes closed in hopes she'd fall back to sleep. She was calling, "mom...mom...mom" when I didn't answer her I hear, "mom.....wook at me" (her L's sound like W's)

I guess it's always good to vent a little, it helps you re-think what you're griping about.

To end this very long post on an exciting note. I'm working on transferring videos of Hailey on to my computer rather then have them linger on my phone. So many people want to see what Hailey is doing now and I want to show them. It's a work in progress, don't know how long until it actually happens but it's something I would like to do. I need something positive to look forward to. I love sharing my Hailey.